Today continued to be a flurry of activity.
Matthew was in the midst of an ABR diagnostic test (high spectrum) for his hearing during the previous blog post. He hears normally out of his right ear, but has moderate to severe hearing loss on his left side. We are being referred to an ENT to help determine the cause and potential treatments. Thankfully, with his right ear, he should develop speech and language normally. The audiologist indicated that the hearing issue is not uncommon when there are kidney issues. Who knew? (Not I) We will have to schedule another ABR diagnostic test, this time w/the low spectrum checking not only the hearing but if anything changes over time. We pray it does not, or if it does change, only for the better.
Our attending neonatologist, Dr. Cox (Cox happens to be my paternal grandmother's maiden name!), stopped by before she headed out for the day and indicated that tomorrow may be our day to go home. I’ll believe it when all of us are at our home in Cypress, but I’m hopeful.
Matthew’s feedings have continued to go well. He is a pokey eater, as was Alyssa, but he's finishing his bottle w/some encouragement. We did a happy dance next to his crib when the NG tube was removed today. Well, I did a happy dance and Matthew screamed. I guess I wouldn’t have liked someone pulling a tube that was in my belly out of my nose. Ouch.
More good news arrived today. We received a follow up visit from nephrology. This itself is pretty exciting given we waited for 4 days to see them originally. But they also brought good news. Although Matthew’s measure of kidney function is a bit decreased, they are not concerned given his 2 kidneys are really acting as one. We are to ‘wait and see’. They will monitor his kidney and kidney function over time through creatine levels and ultrasounds of the kidney. We want to make sure that his kidney(s) grow with him over time. If it does, then there is no problem. If it doesn’t, he will have continued decrease function in years to come and we can address that then. The renal attending indicated that in several months we should be able to get a feeling of the trajectory. “No intervention at the moment.”
That seems to be the theme of our stay here at TCH. We’ve uncovered much of Matthew’s uniqueness (and now I have a pretty good idea of what forms in the womb at 7-8 weeks) but much of it does not impact him now and may not ever become a problem in the future. There are still scary diagnoses that genetics may come back with, but until we know, we are treating the ‘symptoms’ and all of them can either be addressed or are not limiting. What an answer to our prayers!!
This week has been both uplifting and draining at the same time. We started in the deepest pit of despair which has turned to light and hope. We have so much..wonderful family and friends, a fantastic care team here at TCH, the prayers and positive thoughts of so many, the RMH, our wonderful kids…and we are so grateful. Although this week wasn’t in our plans, I’m thankful for the time I’ve been able to spend loving and caring for Matthew. Tomorrow (hopefully) I won’t have much uninterrupted ‘loving on the baby’ time. I’ll have to fight Alyssa for it.
Finally, the family whose baby is in the crib next to Matthew’s could use some extra prayers tonight as they are mourning the loss of their expectations with an unexpected diagnosis of downs syndrome. I hope and pray that they quickly find their way out of their deepest pit of despair and that their network is as strong as ours has been. I cannot even imagine where we would be without the love, support, and prayers of our friends and family! Thank you!